Ashley's CI surgery

You guys are being way to kind. I am doing what I need to for her. I could have just pushed her aside because she is hearing and visually impaired. When I found out the docs wanted to take Ashley at 25 weeks I was terrified. I prayed every day till her birth and every day after for a chance to be a good mother to my baby girl. All I wanted was to be worthy of being a mom to one of Gods little angels. He has given me that chance with a few bumps in the road. I am so much stronger now that I have my little girl. She has taught me so much. She drives me to be a better person. It's funny how kids change your whole outlook on life. Some to the good some to the bad. She is here I know for a reason. I know she will do great things as she grows up. I am going to make sure I do everything possible to help her on her journey. I wish that all parents looked at their children that way. So many take things for granted. They should be thankful every day that they have the privilege to be a parent. Sorry to sound so preachy. I have been fired up lately. Too many babies being abused and killed by parents and caregivers in my local news lately.
 
Just a bit off-topic, but ...

My cousin had very premature babies - like 3 months earlier. I've been told that they are doing well now.
 
Ashleysmommy, actually I think a lot of people here are just very happy to see a parent with an open mind, as to methodology. A lot of times, it seems like hearing and nondisabled parents choose a methodology based on idealism.
Does Ashley seem to be doing well developmentally? Like no signs of mental retardation? I know that's a risk when it comes to preemies. It's probaly too early to really tell..........right? It's probaly very hard to figure out if the delays are caused by her being deaf-blind or other things at this age. All I can say, is hope for the best! Doctors and "experts" don't know everything! I am not deaf-blind, but I am deaf with other disablities. Believe me, my parents and I have gotten such awful prognoises (eg I'd never go to college, etc etc.)
 
They feel like part of her delays are from her vision and hearing and then some from being so early. At this time there is no sign of mental retardation. She is really to young to tell 100%. Doctors and therapist are hopeful. She picks up on things so fast and is catching up little by little daily. She is 18 months old now and does everything but walk and talk. She is trying to walk a little. With help any way. She has quite a few sensory issues that hold her back with some things. She does not like you to take her hands to show her things. That hurts with learning signs. She is getting better. Work in progress I say. Ashley just loves showing off to her docs. They think she can't do something and she is determined to prove them wrong. I think she gets her drive from me. Her corrected age is about 12 months now so she is not that far behind.
 
SnAzZyStyLe2002 said:
Just a bit off-topic, but ...

My cousin had very premature babies - like 3 months earlier. I've been told that they are doing well now.
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Wow! Born 3 months early? That has to be a scary experience for your cousin. *sorry to go off topic* :)
 
Yes it is scary. Ashley was born at barely 25 weeks. I had just started my 6th month. Having a preemie is a very stressful thing. You just have to remember to stay strong because your baby needs you. I didn't have time to fall apart. I still don't 18 months later.
 
ashleysmommy said:
Yes it is scary. Ashley was born at barely 25 weeks. I had just started my 6th month. Having a preemie is a very stressful thing. You just have to remember to stay strong because your baby needs you. I didn't have time to fall apart. I still don't 18 months later.
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Yea that's true. When I was 7 1/2 months pregnant with my son, I was rushed to the hospital for atrial fib (irregular heartbeats) and the drs couldnt get my heart rate back to normal right away. I was kept at the hospital and by the 5th day, they said if my heart didnt return to normal by the 7th day, they were gonna deliver my baby so they could give me shock treatments. Thankfully, the next day, my heart returned to normal. I was released on the 7th day and for the remainer of the pregnancy, I lived in fear and so paranoided every time my heart would beat rapidly. It wasnt fun and I dont mind another baby but I am too scared of that happening again. I couldnt fall apart cuz that would have aggravated my heart even more so I had to stay strong. It was a challenge cuz I was on the verge of panic.
My son is now 17 months old. He and Ashley are 1 month apart, huh? He was born on Oct 27th. When was Ashley born? :)
It is a blessing that Ashley made it. :)
 
She is 18 months old now and does everything but walk and talk. She is trying to walk a little. With help any way. She has quite a few sensory issues that hold her back with some things.
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Sensory integration disorder? Does she have an occupational therapist?
Is she babbling, althou not talking? Are you breastfeeding her? You know......that might be something that could really give her a developmental boost. It might even help with any nereological spoken language issues. Even if you're doing formula, you could supplement with breastmilk. If you want to get started, contact La Leche League........it can't hurt, and will hopefully help and give her an edge!
 
shel Ashley was born September 16,2005. Three days after her daddy's birthday. She is my little miracle baby. And DD yes Ashley has an OT. She is working on her sensory and feeding issues. Speech is helping with feeding too. She doesn't like solids very much. She is on PediaSure. She likes pudding and some stage 1 and 2 baby food. She is having a GI study done this month to make sure her reflux has not done damage that would make her not want to eat. She is VERY picky. She gets that from her daddy. She is not gaining enough weight according to her doctors. Her daddy is very small framed and weighs nothing. He is 5' 10" and 125lbs soaking wet if he is lucky. She is sooo much like him.
 
Oh yea. She is very vocal. She babbles and makes all kinds of sounds. She laughs and giggles all the time. She does razz berries and kisses too. She is a mess. She has said an accidental word or two. She says hey all the time. She shakes her head yes and no a lot too.
 
She babbles and makes all kinds of sounds.
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Excellent sign..........means she may not have apraxia...I can't wait to see how well she does.
You might want to consider supplementing her formula with breastmilk. I know that breastmilk can really help with GI issues, (not sure about reflux)
and there's also the possibilty for higher IQ. May also increase her weight faster.....if you're not comfortable with starting it with Ashley, you could pump and give it to her out of the bottle.....I dunno......just an idea that might really really help her. After all, the research indicates that kids with out disabilites, who are breastfed, do better then the kids who are exclusively formula fed. If you've tried it, and it wasn't your thing........that's OK.......just thought I'd throw it out there!
 
She was breast fed while she was still in the NICU. My milk dried up after 2 1/2 months of pumping. Too much stress is why the docs say it stopped. She had that for a while any way. She is not on formula any more.She still takes a bottle but with PediaSure. We put extras in it to boost calories for her. She is seeing a dietitian too about her weight gain. They say she gets enough calories she just works them off as fast as she gets them. She is never still. She only takes1 nap a day. An hour or 2 if I am lucky. She is a busy girls
 
We have our good days and bad days. She is a good girl for the most part.
:Ohno: :Ohno: Only 3 days to activation. WOW. Is it Thursday yet? :giggle:
 
Yes it does !! Sometimes not fast enough. I am getting anxious. I need to keep reminding myself to be patient. HA! Good one.
 
She was breast fed while she was still in the NICU. My milk dried up after 2 1/2 months of pumping.
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Oh good!!!! So she had a good foundation in that area. Excellent!
So they don't think its failure to thrive or anything like that? Maybe its just her metabolism.
 
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